Key Findings: Public Perception of Birth Defects Terminology

A special issue of the journal Birth Defects Research (Part A) recently published a new study online: “Public Perception of Birth Defects Terminology.” You can read the article’s abstract here. See below for a summary of the findings from this article.

Main findings from this study:

Birth defects are defined as conditions present at birth that affect the structure or function of the body. This is a well-recognized phrase, yet concerns have been raised about its perceived negative connotation. The proportion of individuals who do react negatively to this phrase is unclear. In a nationally representative sample, “birth defects” was the most preferred phrase, but it was also considered offensive by over 20% of respondents. Other phrases that respondents were asked about included birth conditions, birth disorders, congenital anomalies, congenital malformations, adverse pregnancy outcomes, and children with special needs. But, none of these were preferred over “birth defects.”

About this study:

What is currently known about this subject?

Although the description “birth defects” is a common phrase, some people with birth defects and their family members have voiced concerns that this phrase promotes a negative view among the general public. Unfortunately, no previous studies have investigated this issue. Other health groups have looked at changing common terminology in their fields to increase acceptance by the public. For example, the phrase “intellectual disability” has replaced the phrase “mental retardation.”

What did this study look at?

Researchers used data from a nationally representative survey conducted in 2007. The survey asked respondents

• If they or a member of their family were affected by a birth defect,
• Which phrases would be a good way to describe problems present at birth that affect a baby and can result in physical or mental disabilities,
• Which phrase would be their first choice to describe these problems, and
• Which phrases might be offensive.

What were the results of this study?

The phrases most often chosen by respondents to describe problems at birth that affect the structure or function of the body were:

• Birth defects
• Children with special needs

Why is this study important?

Phrases used for birth defects vary across tracking systems, support groups, and organizations nationally. This study may inspire further research on the most suitable phrase to best serve people affected by birth defects. A publicly accepted term potentially will:

• Help unify efforts in birth defects tracking and prevention,
• Enable positive engagement with affected families, and
• Promote more effective communication to the public.

To learn more about birth defects, visit www.cdc.gov/birthdefects

Reference

Mai CT, Petersen EE, Miller A. Public Perception of Birth Defects Terminology. Birth Defects Res (Part A). 2012. [epub ahead of print]